Jarrett Linder1, Nadia Hidayatallah2, Marina Stolerman3, Thomas V McDonald4, Robert Marion5, Christine Walsh5, Siobhan Dolan6. 1. Albert Einstein College of Medicine, Bronx, NY. 2. Ferkauf Graduate School of Psychology, Yeshiva University, Bronx, NY. 3. Private Practice, 425 E 86th Street, Suite 1A, New York, NY. 4. Departments of Medicine and Molecular Pharmacology, Albert Einstein College of Medicine/Wilf Family Cardiovascular Research Institute, Bronx, NY. 5. Department of Pediatrics, Children's Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, NY. 6. Department of Obstetrics & Gynecology and Women's Health, Albert Einstein College of Medicine/Montefiore, Bronx, NY.
Abstract
OBJECTIVE: To identify major concerns associated with implantable cardioverter-defibrillators (ICDs) and to provide recommendations to adult and pediatric physicians involved in the care of patients with ICDs. BACKGROUND: Cardiac ion channelopathies are a well-recognized cause of sudden cardiac death in infants, children, adolescents, and young adults. ICDs are effective in preventing sudden death from fatal arrhythmias in patients with known cardiac channelopathies. There is a paucity of research on the effect of ICDs on quality of life in patients with cardiac channelopathy diagnoses, especially young patients. METHODS: A qualitative study interviewing patients and families affected by inherited arrhythmias was conducted. Fifty participants with personal or family histories of cardiac events or sudden death were interviewed individually or in focus groups by clinical psychologists. All interviews were transcribed verbatim and then analyzed and coded based on current qualitative research theory to identify themes related to the research question. Twenty-four participants discussed ICDs in their interviews. RESULTS: Participants reported concerns about ICDs, and these concerns were categorized into six themes: (1) comprehension and physician-patient communication; (2) anxiety; (3) restrictions and fallacies; (4) complications; (5) utility; and (6) alternative therapy. Participants noted communication breakdowns between providers and their colleagues, and between providers and their patients. Participants and their families experienced many different forms of anxiety, including worry about the aesthetics of the ICDs and fears of being shocked. Multiple restrictions, fallacies, and complications were also cited. CONCLUSION: Interview themes were used to formulate recommendations for counseling and educating patients with ICDs.
OBJECTIVE: To identify major concerns associated with implantable cardioverter-defibrillators (ICDs) and to provide recommendations to adult and pediatric physicians involved in the care of patients with ICDs. BACKGROUND:Cardiac ion channelopathies are a well-recognized cause of sudden cardiac death in infants, children, adolescents, and young adults. ICDs are effective in preventing sudden death from fatal arrhythmias in patients with known cardiac channelopathies. There is a paucity of research on the effect of ICDs on quality of life in patients with cardiac channelopathy diagnoses, especially young patients. METHODS: A qualitative study interviewing patients and families affected by inherited arrhythmias was conducted. Fifty participants with personal or family histories of cardiac events or sudden death were interviewed individually or in focus groups by clinical psychologists. All interviews were transcribed verbatim and then analyzed and coded based on current qualitative research theory to identify themes related to the research question. Twenty-four participants discussed ICDs in their interviews. RESULTS:Participants reported concerns about ICDs, and these concerns were categorized into six themes: (1) comprehension and physician-patient communication; (2) anxiety; (3) restrictions and fallacies; (4) complications; (5) utility; and (6) alternative therapy. Participants noted communication breakdowns between providers and their colleagues, and between providers and their patients. Participants and their families experienced many different forms of anxiety, including worry about the aesthetics of the ICDs and fears of being shocked. Multiple restrictions, fallacies, and complications were also cited. CONCLUSION: Interview themes were used to formulate recommendations for counseling and educating patients with ICDs.
Authors: Tim Boussy; Gaetano Paparella; Carlo de Asmundis; Andrea Sarkozy; Gian Battista Chierchia; Josep Brugada; Ramon Brugada; Pedro Brugada Journal: Heart Fail Clin Date: 2010-04 Impact factor: 3.179
Authors: Sue Ann Thomas; Erika Friedmann; Chi-Wen Kao; Pia Inguito; Matthew Metcalf; Frances J Kelley; Steven S Gottlieb Journal: Am J Crit Care Date: 2006-07 Impact factor: 2.228
Authors: Samuel F Sears; Lauren D Vazquez Sowell; Emily A Kuhl; Adrienne H Kovacs; Eva R Serber; Eileen Handberg; Shawn M Kneipp; Issam Zineh; Jamie B Conti Journal: Pacing Clin Electrophysiol Date: 2007-07 Impact factor: 1.976
Authors: Louise Bordeaux Silverstein; Marina Stolerman; Nadia Hidayatallah; Thomas McDonald; Christine A Walsh; Esma Paljevic; Lilian L Cohen; Robert W Marion; David Wasserman; Siobhan M Dolan Journal: Qual Health Res Date: 2014-08-11
Authors: Nadia Hidayatallah; Louise B Silverstein; Marina Stolerman; Thomas McDonald; Christine A Walsh; Esma Paljevic; Lilian L Cohen; Robert W Marion; David Wasserman; Sarah Hreyo; Siobhan M Dolan Journal: Per Med Date: 2014-09-01 Impact factor: 2.512